Thank You

Thank You everyone for your support of families afflicted with ALS. The LA County walk for ALS was a great success. There were 150 groups ranging in number from an gaggle of 92 to a dedicated individual of 1, each were there to support or in memory of a person stricken with this disease.

Our final tally: 32 friends and family walked with us that day; through your generous support, as of last count, $7,300 was raised. A special thanks to all who joined our ranks in the walk. Your company was special. Each of you joined on your own accord, volunteered, unsolicited; many taking up our cause as your own asking your own friends for support. And, to all of you who gave so generously, you gave more than what we could have asked. Many donated without being asked. Shirley - the one who started it all - had to continually set the team goal higher and higher: $200, $500, $1000, $1500... Each time a new goal was set ... It was exceeded. Even our final goal of $6500 was surpassed by $800.

Thank you all. Many families will benefit from your generosity and one day, hopefully, a cure will emerge. Most of all, our family is reminded, once again, of the very, very special community that has embraced us.

A Walk For ALS

This Sunday at Exposition Park in LA (new home of the Endeavour Space Shuttle) we will walk - I will ride my chariot - to raise awareness for ALS.

This walk, initiated by my sister-in-law, Shirley - Kathy's sister, came as a complete surprise to me. Never, ever, had I heard any word of walking. The first notice of her decision was a post on facebook. Although christened "Team Daniel", there was no team. Shirley, set out on this quest alone, her personal voice of protest against the injustice of this disease and to support a family she loved. I don't know if she expected others to join, perhaps so - knowing our family - but I could tell by the passion in her voice that it didn't matter. This is something she needed to do.

Almost immediately, Kathy was onboard with Sarah, my eldest daughter right after. It wasn't long before both our families had signed up, ready to walk. Kathy, Shirley and Sarah sent out a round of emails to good friends explaining our cause and requesting help in raising funds to battle ALS. I felt funny as the poster boy of this quest and being raised Japanese there is this thing of 'enryo' (a social etiquette of restraint) which made one especially uncomfortable in soliciting help in a cause that I was included. To push further would be imposing on others and contrary to my Japanese DNA. So any funds that a polite request would bring and the rally of our two families together was more than enough for me. I was touched by their thoughtfulness and looked forward to our walk.

Much to my surprise, it didn't stop here. One by one, people joined this quest. What started as a walk of one has grown to a walk (as of today) of thirty-two. What started as a modest fundraising goal of a few hundred dollars has, through your incredible generosity, been continually exceeded and raised so that the goal is now at a very close $6,500. This group that started so modestly now stands as one of the top 10 contributors in this Sunday's walk for ALS. Others joined in to cook lunch so we could properly thank all the walking participants. And Chris, who recently completed as a gift to me, a beautiful oil canvas of my journey with ALS, called in favors to affordably produce our team t-shirts featuring the painting. I am humbled by the generosity and compassion of so many, for a cause that is not their own. I did nothing to deserve this yet you opened your hearts and gave generously of your resources and time.

Many will say "Oh, it was nothing!". Please, do not underestimate what you do. From this side, it is everything. Each person is a voice of encouragement and collectively you speak volumes to lift the spirit of a traveler on journey such as this. This path can be desolate and lonely but the chorus of your voices remind me that I am not alone. ALS is my cross, my burden that I carry for Christ. I bear it willingly in order to testify to His love. But, what I see now, is that what you have done is join together and spiritually lift the burden of this cross from my shoulders to place across your own; to share, if only for a moment, the weight of this journey with this witness.

Thank You

Philippians 1:3-6 I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.

http://webgw.alsa.org/site/TR/Walks/GoldenWest?pg=entry&fr_id=8174

I fell

Well it happened. Yesterday, going down the stairs, I fell. They said it would happen eventually.... falling. It's part of the progression, my life with Al, my gait becoming more unsteady, my balance more unsure. It was a hard fall. A concussion and a broken/cracked rib. I've long lost that ability to catch my fall, to protect myself from injury. Outstretched arms when falling are now only a symbolic gesture of protection. An artifact of a prior healthy time when my arms were strong and could cushion my fall. Now, they simply crumple on contact, assigning impact absorbing duty to my face, shoulder and/or back. Fortunately, I've only fallen only once, about 9 months ago; increasing vigilance in face of unsteadiness has served me well up to now. Not sure exactly how this one happened. I can't recall much around the fall, but by best guess I lost my balance, my grip on the handrail and then went timber like a tree down the stairs. I don't know what went wrong, it was probably a misstep that caused me to go head first down onto the stairs. Kathy was just outside the front door when she heard the loud thud signaling my contact with the ground. Once inside, she saw me laying there on my back at the base of the stairs, legs sprawled up a step or two. My eyes open, unfocused, staring blankly at the ceiling. The lights were on but nobody was home. It was a like a solid right cross was delivered to my temple. My brain was out... scrambled and was now in reboot mode. At first, I just moaned, unresponsive then mumbled incoherently. Gradually I began to gather my thoughts but it was a solid hour before I could think straight enough to get up. Initially I didn't want to go but decided later that it would be prudent to get checked out. In the ER, CT of the head was negative, no damage except for the tender left temple and stiff jaw. X-Rays showed a break/crack in one rib in the back, second point of contact with the stairs. I'm okay now, not 100%, but doing well. The room still spins a bit when getting up or laying down. Getting up, laying down and moving about hurts. The pain from the rib combined with the muscle weakness makes it especially challenging to get up. I need more assistance now... Gotta work on it to regain more independence.

Easter Breakfast

Hi I'm back. Despite my promises to write consistently, I've been absent - I apologize. It's not that I've forgotten nor lost interest. On the contrary, writing to you, sharing, is continually on my mind. It's just that we have been quite busy this year and me, running on these old nicads, I have to pick and choose what I do. Since the first of the year, Kathy and I keep trying to do what we can. We started the year organizing a mochitsuki for our church. Then off to visit a few churches to share about this journey and Baja. We reacquainted with old childhood friends and visited with current ones. We visited with a friend, who also has ALS and hope to visit with another fellow traveler soon. I discovered I have sleep apnea. We traveled to Baja to visit our last home build family and begin the planning for our next LAH Baja mission. An excursion to Mammoth for a brief family retreat. And just recently hernia surgery and Easter breakfast. It's been fun... rewarding, but I'm getting pooped. I have to pace. With only so much energy, many of these activities along with working full time leave me tired, too tired to write. Last week, I may have pushed too far. I had hernia (not hemorrhoid) surgery Thursday, the day before good Friday. Then off in the AM to Costco, Staters, Von's and Smart and Final to buy 25 dz eggs, 30lbs of potatoes, 50lbs of bacon, sausage and ham, 16lbs strawberries, 10lbs of onions... you get the picture. Enough good eats to fill the Sienna for the annual LAH Easter Breakfast Buffet. Saturday was prep all morning. And, Sunday the big cook. It was fun, so many helped. They did all the work; I did what I could and ran around and supervised. But, by the end, Sunday afternoon, all that walking and standing, I was sore and swollen. I know, I know... why on earth would I do all this with a fresh 6 inch incision inches from my crotch? Stupidity? Could be, that's not foreign to me. In defense though, I didn't plan get cut and then do breakfast... no, really, I'm not THAT stupid. When surgery was scheduled, the annual Easter Breakfast was off for the year, planned construction had our kitchen out of commission. Well, construction was postponed, the kitchen is open, hey it's time to plan breakfast for Easter. I did wait - a little - for someone else to volunteer. And, when I did volunteer, Pastor Seigo did try - a little more - to talk me out of it. But, I lied - enough - to reassure him that I'd be fine and wouldn't overdo it. It was important to me. I knew I would be sore but, I wanted to do it. Why? It's the last lap. Although there's always a chance, odds are this is my last shot. And, like the last go around I wanted to savor it one more time. To watch the faces, the smile on each person, sitting comfortably, relaxed, conversing, smiling, laughing; enjoying the food, the moment... the fellowship. To be a part of the giving, the rich Spirit that courses through our church, is something I relish. I'm going to miss it... I already do. Thank you Lord, for the opportunity.